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Update: put on hold


The more you look into this mess the worse it gets: This article quotes a speech by Jeremy Hunt on 2nd March: "Hunt said that when information is linked with the sequencing of human genomes, “we are going to get into a whole new world when it comes to understanding disease”. This will pose problems for politicians when working out what to fund, but “will be fantastic for humanity." A great illustration of the 2 faces of, potential massive force for good (genetic links to disease) potentially disastrous for privacy (its the government's answer to not getting its way with ID cards - now they can have all our data PLUS our DNA - there's nowhere to hide!) Ben Goldacre has likened to nuclear power, to be handled with great care, in fact the best possible care. Yet …. HSCIC doesn't even have a code of practice in place. I as a GP did NOT get a notification of what I was to tell my patients about The failings of the distribution and content of the leaflet are well known. The Information Commissioner had to warn HSCIC in February that there would be legal ramifications if they went ahead and the public had not been properly informed. This is not just careLESS its downright cavalier at best, subterfuge at worst. Then just to cap it all the HSCIC, at the parliamentary select committee was unable to tell MPs how data from 47m hospital records data was released to insurance companies, stating it was 'a mistake' by their 'predecessor organisation' and there were no records left from that organisation (the NHS IC) of why or how it happened, when the HSCIC logo was on the memorandum of understanding between whoever gave this data away (for a paltry £2,200) and the Insurer's body. (Laughably, the HSCIC website says they are the 'trusted' holders of data). I'm sorry I just don't believe them, I don't think it was a mistake, I think they know perfectly well how it happened. And could somebody explain to me why they have decided to make their Director of Public Assurance redundant and not replace him, just at the very moment when Public Assurance is so desperately needed?

Posted date

02 Mar 2014

Posted time